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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5 and 6 Planning Group Subgroup on Family Support Conference Call on October 9, 2012

The Interagency Autism Coordinating Committee (IACC) Subcommittee for Services Research and Policy Strategic Plan Questions 5 and 6 Planning Group on Family Support convened a conference call on Tuesday, October 9, 2012.

In accordance with Public Law 92-463, the meeting was open to the public. Sally Burton-Hoyle, Ed.D., Chair, presided.

Participants:

Sally Burton-Hoyle, Ed.D., Chair, Eastern Michigan University; Roger Little, Ph.D., Designated Federal Official, National Institute of Mental Health (NIMH); Elizabeth Baden, Ph.D., Office of Autism Research Coordination (OARC), (NIMH); James Ball, Ed.D., JB Autism Consulting; Elisabeth Dykens, Ph.D., Vanderbilt University; Lisa Goring, Autism Speaks; Paul Law, M.D., Kennedy Krieger Institute; Alison Tepper Singer, M.B.A., Autism Science Foundation (ASF); Ann Turnbull, Ed.D., University of Kansas

Welcome and Discussion

This conference call was held to address issues related to family support under Question 5 (Where Can I Turn for Services?) and Question 6 (What Does the Future Hold, Particularly for Adults?) of the IACC Strategic Plan. The update section would focus in part on research related to the effects of an autism diagnosis on the extended family – specifically with regard to stresses faced by families, best practices for whole-family support related to caregiving, etc.

Members noted that the update should consider how community research directly affected family services; they began by identifying research needs. The Group noted that they heard from families that focus was needed on the types of support that could help to reduce stress, and improve quality of life (QoL). This would require a research shift to evaluate positive support outcomes, and the results of services. The overall goal of the update was to provide the tools needed to develop positively as an adult. Losing track of higher-functioning individuals was a key problem.

The Group agreed that there was a need for research that would demonstrate positive outcomes for children with ASD with the use of family-based interventions. It was noted that this type of research on family interventions was often unfunded because there had been a perception that individuals with ASD disability would not benefit. However, members said that lowering family stress and increasing family QoL had led to positive effects for individuals with autism.

Another proposed major topic was learning how to navigate the adult support system. They noted that there were many federal benefits for adults with autism. However, families and transition coordinators often did not know about these programs. Research was needed to help families and individuals with autism better navigate these systems in order to obtain better support. Research generally had not aggregated the lessons learned by innovative families, who have navigated the systems successfully, and translated these approaches into interventions.

Members also noted that many families stopped participating in research as family members with ASD entered the adult years. This made it difficult to understand the problems and the supports available. Good data were needed regarding the number of adults with autism in the criminal justice system. Additionally, information currently was needed regarding the key components for a successful transition plan.

There was also a need for translational research on community concerns. The Group noted that tracking and monitoring strategies were needed to improve life-changing interventions. In addition, the need for treatment-guided research was urgent because families needed hands-on strategies in the present. Another need was for family-friendly literature reviews, not only on autism research, but on other developmental disabilities as well.

Another key research gap had been the psychological effects on siblings. They have been the often forgotten members of the family. However, members noted that there was an emerging research movement to better understand the sibling experience as it related to autism and other developmental disabilities.

More data on divorce rates in families of autistic individuals were needed as well, because the existing literature had been conflicting. In addition, the bulk of research on marital quality in these families (80-90 percent) appeared to be from the perspective of mothers.

The Group cited wandering as a good example of how the community could work with researchers and public policy officials to achieve a common goal. The issue was raised; the community mobilized; funding for intervention research was obtained; the research was conducted, published, and disseminated; and public policy change was enacted. Wandering should be included as an example of an IACC success story in the introduction and in Chapter 7.

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Adjournment

The call was adjourned.

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Certification

I hereby certify that this meeting summary is accurate and complete.

/Susan Daniels/ November 16, 2012
Susan A. Daniels, Ph.D.
Executive Secretary, Interagency Autism Coordinating Committee

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